Sunday, December 6, 2015

I feel as if I've been preparing for this day for the last two years. I practiced what I would say - how I would react - what it would sound like, look like and feel like. I can tell you that it wasn't at all how I pictured it would be.

Today was the day Brian wanted to know all about organ donation.

How ironic that it would be today. I just finished up a 40 hour long fundraiser to celebrate Hope's birthday and Gavin's gift of life where I raised an unprecedented $10, 820 for the Gift of Life Family House - ONLY using social media. (I'll be writing more about that experience in the days to come) Brian was home sick one of those days and we sat on the couch for a while watching the donations roll in. Perhaps it was that day that the seed was planted.

Today he wrote his letter to Santa.

He made sure, as always, to include Gavin. He doesn't want Santa to forget the children in Heaven, he told me.

We drove to the Mall in our fancy Christmas clothes. I retrieved Hope's stroller from the trunk and closed the door - smiling a little smile when I saw my "Donate Life" car magnet. I turned and saw Brian looking at me.

"What does that mean, Mommy? I mean - I know what it says, 'Donate Life,' but what does it MEAN?"

I instantly felt a jolt of "this is it!" I never expected it would happen in a mall parking lot - on the way to see Santa. But I knew that it couldn't happen then and there. At least not properly. I looked him in the eye and said...

"Brian, we can talk about this later when we get home. It's a little bit complicated and I want to make sure I explain it well and answer your questions."

He seemed satisfied with that. But sure enough, he brought it up again while we were waiting (and waiting... and waiting...) to see Santa.

"Mommy, don't forget about telling me the Donate Life story, okay?"

Again, I looked him in the eye. "Brian, I know how important this is to you. It's important to me, too, and I want to make this conversation special. I promise you I won't forget."

His visit with Santa was so special. Santa knew that his 7th birthday was in ten days, that Hope (who was screaming so I took her off his knee so Brian could have his moment) was his little sister, that Gavin was in Heaven and would have a great Christmas... Brian was speechless and it was magical.

I found myself practicing my organ donation explanation on the way home, but quickly decided to make better use of my time. I knew in my heart that I just had to talk... to tell him the truth as I always have. Well, except for the Santa thing, but I think I get a pass for that.

I put Hope to bed a little early and told Brian when I came back downstairs I was ready to have our special chat. I let him choose where we should sit and he chose "our spot." Lately we have enjoyed snuggling up together on a big living room chair, covered with an oversized soft blanket in front of the Christmas tree.

"So, is there anything in particular you want to know about the 'Donate Life' sign?" I started a bit nervously.

"No - you can just tell me everything, okay?" he said.

Here goes, I thought...

"So, the 'Donate Life' sticker on my car is referring to organ donation. You've probably heard us talking about that here and there, right?"

"Kind of," he said.

"Well, it's something that's really important to us and I'm going to do my best to explain it in a way you'll understand. Okay, so you know how I've told you that our bodies are like 'suitcases?' How, just like a suitcase, all of the important things are inside? But once you get where you need to go, you don't have a need for the suitcase anymore. You take all of the important things out, right?" I started.

"I know. And when we die, it's only our souls that go to Heaven. We leave our bodies here," he confidently told me.

It should be noted that he confidently told me that.

"So, can you believe that there are some people who have a really sick part in their body and need it replaced with a new part - or they'll die?"

He turned and looked at me with wide eyes.

"For example, some people have really sick kidneys - they just stop working. Those people have to have a machine do the work of their kidneys or they will die! OR - they could get new kidneys and live!

For other people, they might need a new heart... or a new liver... or new eyes.

So, a person chooses to 'Donate Life' long before they die. That means, when they do die, their doctor knows that they want to help other people live with the parts they don't need anymore. After they die, the doctor takes them to an operating room and removes the parts that can be used to help other people!"

"Woah." was all he had.

"And get this. You'll love this part. For someone to get a new organ, they have to be a perfect match to the person who died. So imagine someone anywhere in the whole country who needs a new kidney - and imagine someone dying who has the perfect match for them. The person who is sick gets a call from their doctor telling them 'We found a perfect kidney for you!' Can you imagine how excited they would be?"

"Yeah!" he said with bright eyes.

"So - that person heads to the hospital right away. And HIS doctors get on an airplane or a helicopter or a fast car and go quickly to pick up the kidney that the person who died is giving them! When they get back, they put the new kidney in the sick person and he is often 'all better!' And I am sure that the person who donated that organ is smiling from Heaven - feeling pretty proud that he or she saved someone's life. That is what it means to 'Donate Life.' You give a part - or parts - of yourself to another person after you die so they can live! Did that make sense to you?"

"Yes," he replied... but I could tell he needed more.

"Are you wondering why it's so important to us?" I asked.

"Yes," he answered.

"Well... that's because Gavin was an organ donor." I told him.

His head whipped towards me.

"WHAT?" was all he said.

"When Daddy and I knew that Gavin was going to die - after the doctors tried and tried so hard to make him better, but couldn't - we decided that Gavin wouldn't want another person to die if he could help them. So, the doctors came to his room and took him to the operating room. And you know that sign that says 'Superhero Gavin - Off to Save Lives!' that you've seen in the house? We taped that to his bed. And Brian - you're not going to believe this. Daddy and I walked alongside of Gavin when the doctors were taking him to the operating room and everyone started clapping. For Gavin!"

"Everyone? In the whole, entire hospital? Why?" he asked.

"Well, it felt like everyone! But it was everyone in that part of the hospital where we were. And they were clapping because people who are organ donors are considered heroes. So Gavin died a hero and they knew he was about to save someone's life!! That's why they were clapping."

"Wow." was all he had.

"And guess what, Bri. The doctors found someone allll the way across the country that needed not one - but TWO kidneys - to live. And Gavin's two kidneys were a perfect match. And this person was a young Dad - just like your Dad! Can you imagine how happy his family was that day finding out that, because of Gavin, they would have many more happy years with him?"

"Wow." was all he had.

"So his doctors flew all the way to Delaware and picked up Gavin's kidneys. Gavin was..."

"already in Heaven." he finished for me.

"Yep! And do you know that after this man's doctors put Gavin's kidneys into his body, he got so much healthier? We don't know who he is, but I heard he's doing so well now and his family is probably so happy."

"Wow." again.

We sat in silence for a while, just holding each other under the Christmas lights.

"So... how do you feel about everything I told you, buddy?" I asked a bit nervously. Had I told him too much? Explained it well enough?

And then...

"Good."

The dreaded "good" that I hear after so many questions.

But then...

"Actually, awesome. I feel awesome. I think it's awesome that Gavin wanted to help people. I would have clapped for him, too."

I would have clapped for him, too, he said.

I would have clapped for him, too.

We sat some more and really, there was nothing I could say after that. As we sat there I thanked Gavin for giving me the right words to say to his little brother. I always strive to be honest with Brian - and tonight was no exception. I would have had this conversation a year ago - or two years ago - but I needed him to ask. I knew he would be ready when he asked.

As I tucked him into bed, he reached over and grabbed the bear. The same bear that he gave Gavin when he said goodbye.

He whispered a wish into that bear before he placed it by his brother's head and whispered "I'm going to miss you."

I watched him laying there tonight, clutching that tiny bear, and said...

"Can I take your picture?"

"Why?" he asked. "You're so silly, Mommy. I'm in bed!"

"I know. But I want to take your picture so I remember this night and our special talk forever." I explained.

He sweetly obliged...

"I'm so proud of you, buddy. I really am." I told him.

"Thanks. I'm proud of you, too." he replied.

And then...

"And Mommy?"

"Yes?"

"I'm really proud of Gavin. That he saved someone's life. That was a nice thing that he did since he didn't need those things anymore. He's definitely my hero."

Wow was all I had.

If you haven't already done so, please consider becoming an organ donor. Brian Leong will think you're a hero... and so will I.

22 comments:

Thank you for sharing this post with us. My son was born with multiple heart defects and may someday need a hero heart. When he was born before his first surgery we did sign papers that if they couldn't save him, they could take his other healthy organ and donate them.

Oh Kate, what a gift you have been given! You answered Brian's question so honestly and lovingly. My throat hurts fighting back tears, tears for the loss of Gavin. Tears for your beautiful, sensitive Brian. You were right Kate, he was ready to hear and to know. Your message to him was done with incredible honesty and yet not scary at all. Through all your many struggles , you live in honesty and grace. Kudos to you , my friend, and God bless all of you.

I am reading this with tears in my eyes! At this moment, a friend of mine is awaiting to go into surgery for a liver transplant! They called him this morning saying they had found a match! Praying for him and the surgical staff, as well as for the donor's family.

Wow..What a blessing! Bought me to tears! People can be a living donor too. I was called to be one in 2003 and it was the most amazing experience of my life! I plan to be a hero when I no longer need my suitcase too. Bless you!

I have only commented a few times before, but I have been following your story for awhile. This story had me in so many tears. My husband was suppose to be a organ donor,but he was put on morphine a month before he passed. So that kinda knocked him out of being able to donate. The good news is I'm hoping I will be able to donate when my time comes.

I have become an organ donor. I would love if my death would save someone else. I am also power of attorney of my 23 year old brother who has CP. my dad and I recently discussed organ donation with my brother and all agreed the we would donate his as well if, God forbid, that day comes.

We also donated during your 40 hour fundraiser. Thank you to all of you for inspiring us. And thank you Gavin for all you've done and continue to do.

My husband is a liver transplant recipient. His 15th 're-birthday' will be the day after Christmas this year. We had our Pastor say a special prayer for the donor's family at our wedding because without the selfless act of their family member, my husband would have died. He wouldn't have gotten married or became a father without this gift of life! No words could EVER be enough to express our gratitude to these people who we will never know the identity of.

I can't even begin to imagine the pain you've endured, but PLEASE take comfort knowing the joy experienced by the recipient family which NEVER would have happened without Gavin's gift of life.

Sitting here tears again , remembering the birthday (that I share with you) and reading about how Gavin had passed. I draw so much inspiration from your life and story. It is truly an amazing one and I'm so glad that you continue to share it with us

I am sitting here with tears in my eyes. What you said was so amazing and what a smart little boy to understand everything. God has really given him such a special understanding of all that you tell him. You really are blessed to have such special children, the two that are here and the two in Heaven. Thank you so much for sharing this. I am unable to be a donor because of health issues but I told my husband to donate my body to science so they could perhaps learn about what my heart problems and diabetes have done to my body. If I were healthy I would definately be an organ donor Thank you again and God bless you for not only being a special mom, but for being the special person you are. I love you all.

Kate--- add me to the list, I've followed for a long time.. Love your blog, honesty, pictures & how you are REAL!This story needs to be taken to a publisher.. You go girl, make this into a children's book. Imagine how many parents & children would have this on their bookshelves, imagine how many hospital gift stores, imagine this story in the households of many touched by this.

Wow is all I have too...and tears! This is just amazing.And I completely agree with Turnage about you making this a children's book. I thought the same exact thing and came on here to comment about that!Your post about your conversation with Brian reads so perfectly like a children's book that appropriately explains organ donation. And I just loved how you ended it with "Wow was all I had."Beautiful.

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!